Five concerns of patients

Below are the five main concerns of patients with Behçet’s disease. They sum up the difficulties encountered in getting a diagnosis and dealing with the disease once it takes a hold.

There are many unusual symptoms that appear over a period of time and may not appear all together; this leads to problems with diagnosis. The GP is the first port of call, and most have never dealt with a patient with Behçet’s disease. There is no diagnostic test for Behçet’s disease.

The patient doesn’t always look ill. However, the person can have ulcers of the mouth, legs and genitals, swollen joints, severe and continuous headaches, and many other debilitating symptoms. They have overwhelming fatigue and feel really ill; they find it difficult to function properly on a day-to-day basis. A lot of serious complications can occur with the illness – for example, if untreated, blindness can occur very quickly and other serious health problems are a distinct prospect.

Patients can very quickly feel isolated and lonely when dealing with this illness. They feel overwhelmed. They can lose their confidence, their job, their income, and any relationship they had; they can become dependent on benefits that are difficult to obtain because of the intermittent nature of the flare-ups. Quote: “Your whole way of life for you and your family is disrupted and changed forever.”

There are so few doctors who specialise in the illness, which means that patients may have to see many specialists in different hospitals and in different areas depending on their symptoms – ophthalmologist, dermatologist, neurologist, rheumatologist, gynaecologist, immunologist, urologist, etc. Referrals to these specialists are difficult to obtain, and in some cases there is a postcode lottery for drugs that control the condition.

There is currently no cure, but if patients are lucky enough to get a diagnosis and see the correct doctor, then they are given powerful drugs for the rest of their life that hopefully control their symptoms but that can have serious side effects. What one patient can tolerate and feel better using, another patient may reject. Quote: “You feel like a guinea pig. My illness has flares and I feel unwell for long periods of time.”